6th October 2025
To mark Baby Loss Awareness Week 2025 (9-15 October), we are delighted to share this blog from Bettina Bavi, National CONI coordinator at The Lullaby Trust.

Bettina Bavi, National CONI coordinator at The Lullaby Trust
Baby Loss Awareness Week is an annual, national awareness week which runs from 9–15 October, dedicated to raising awareness of baby loss and campaigning for the provision of better bereavement care. The theme for Baby Loss Awareness Week 2025 is “Together we care – Finding time to care for ourselves, and each other, as part of a community of people affected by all forms baby loss”.
As health visitors, you play a vital role in supporting parents through one of life’s most transformative journeys. In line with this year’s theme, The Lullaby Trust is highlighting our Care of Next Infant (CONI) programme. For over three decades, CONI has provided essential bereavement support to families across England, Wales, and Northern Ireland following the sudden and unexpected death of a baby due to sudden unexpected death in infancy (SUDI).
After the death of a baby, the thought of having another child can bring deep anxiety, fear and uncertainty. Many parents find themselves caught between wanting to celebrate their new baby but feeling the weight and trauma of past experiences.
No family should have to experience this alone.
CONI offers a combination of emotional reassurance and practical support — typically delivered through the local health visiting team — during the first six months of the next infant’s life. The programme helps to alleviate anxiety, build parental confidence, and support families in enjoying their baby’s early months with greater peace of mind.
“After losing my first child, I was left with broken pieces that can never be replaced. I was left with fear of losing my now healthy babies. But with all the support from CONI, more especially the monitor, it helped me a lot when my baby was sleeping as that part of too much sleeping in newborn scares me a lot – thinking are they still breathing. So this experience makes motherhood easy and helps in reducing postpartum anxiety.”
“I think the CONI programme is a fantastic programme for mothers who have gone through a tragic loss like me, I wouldn’t have been the mother I am without it. I would have been in a continuous state of anxiety, but the CONI programme ensured I had peace of mind and support.”
However, CONI’s availability is dependent on local commissioning by public health departments, meaning that access to the programme remains inconsistent. At present, CONI is available in 100% of Northern Ireland, 64% of Wales, and 62% of England—resulting in a postcode lottery for families in need of bereavement support.
It can be deeply distressing for bereaved parents to discover that CONI support isn’t available when they need it most, due to its lack of commissioning in their area. To address these disparities, the CONI team at The Lullaby Trust has launched the CONI Equity Project. This initiative aims to engage with stakeholders and decision-makers in areas where the programme is not yet commissioned, working to identify and overcome local barriers to implementation.
In addition to expanding geographical access, the project seeks to improve equity in uptake among families from ethnically diverse backgrounds. In 2024, approximately 86% of families enrolled onto CONI identified as White British — a figure that does not align with the demographics most affected by SUDI (NCMD, 2024). The project will therefore explore cultural and systemic considerations that may be limiting access for non-White families, and identify strategies to ensure the programme is inclusive, accessible, and responsive to the needs of all communities.
The team is also aiming to enhance access to CONI information for families where English is not their first language or with lower literacy levels. To achieve this, they are seeking funding to introduce a range of new resources to support CONI families and health visitors.
Please contact the CONI team at The Lullaby Trust to find out more, including whether CONI is commissioned in your area and, if not, how you can help us to campaign for CONI – [email protected]
Bettina Bavi, National CONI coordinator at The Lullaby Trust
Reference
NCMD Programme, 2024. Child Death Review Data Release: Year ending 31 March 2024, National Child Mortality Database (NCMD), 13 November 2024